vivdunstan

I'm trying to remember to make time for this each week. To randomly draw a simple past/present/future 3-card spread of the Urban Crow oracle cards which I got recently. And find very easy to work with/interpret.

As usual, I'm using them as a tool to reflect on my situation and circumstances. And think about where I am and what I want to do. I am not using them in a predictive kind of way.

Here is today's spread. With thoughts/comments after the picture.



The middle card, Freedom, was lovely to see. I am currently newly in a better patch in between my recurring rollercoaster of post Covid vaccine neurological autoimmune disease flares. I've had these flares 9 times now, after every Covid vaccine (I get, and need, a lot of Covid vaccines because I am severely immunosuppressed). Each time I am even more ill for up to 3 months, with phenomenally increased sedation, headaches, arm and leg loss of control, and increased bladder incontinence. Many people wouldn't put up with this. But I'm not willing to sacrifice my much needed Covid vaccine protection. And I know I am generating good antibodies from each one.

So I'm in a better patch, for the next couple of months. After that I will get my 10th Covid vaccine, and be iller again for another 3 months. I will just cope. Plus my neurological disease is still progressing, and leaves me severely disabled, even in the better patches. But that progression is slow. And that's partly why I'm still here 30 years into living with this illness!

So yes, this is a time of relative freedom for me, and I want to make the most of it. Maybe get more things done, including the academic journal papers and research projects I am working on sporadically. And maybe get out more with Martin, to have fun.

The left card, reflecting the past, is Anomaly, which can be a problem, or something out of the ordinary, or other interpretations. It's making me think of my latest Covid vaccine flare more than my long-term neurological disease. A devastating neurological flare which has run from early May to early August. And it does tie in with Freedom.

The rightmost card, reflecting looking ahead, is Caching. Which again fits nicely with where I am. I want, in this short better patch, to make new valuable memories, and get things done I can look back on in future. So I want to make the most of this time, in a way I can look back on happily when I'm much iller again.

An interesting draw anyway, and some nice things to think about.

Meanwhile re Freedom, today is the start of the Glasgow Worldcon, and I have digital streaming access thanks to my attending ticket. I won't be watching much live, but hope to see one talk later today. And catch up on even more in the coming weeks and months. I also have Oxonmoot to look forward to in a few weeks. Again with a digital ticket. And ditto for the Edinburgh Book Festival. Streaming has been transformational for me.

So phenomenally sedated at the moment - this has been going on for many weeks in the latest bout, but recurring for many years, if not decades. It's like I've taken a strong tranquilliser. And as if there's a curtain shutting down in my brain. I finally struggle up for dinner, very sleepy, then back to bed after. Thank goodness I don't have much to do! I do have a game to finish off for IFComp in the next few weeks. But that is final polishing. I started coding early for very good reason ... But yup, could do without this.

And yes, we know why this happens to me, with my progressive neurological disease and also recurring post Covid vaccine neuro flares. Throwing more treatment at it doesn't seem to help. It's just where I am, and it's getting worse. But hey, lucky to be here after 30 years of this. Just don't want to sleep all the time ...

Tonight's new reading for me, the play script of "London Tide", a stage version of Charles Dickens's "Our Mutual Friend" which is currently on at the National Theatre in London, UK. The theatre version includes lots of songs by PJ Harvey, with plot appropriate lyrics. So I won't be experiencing them with full melodies, though the words are in the book. Nor will I see the ambitious staging. But basically curious to see how they've adapted this gargantuan Dickens book - my all time favourite - to a theatre version.

I have enormous difficulty reading print now due to my neurological illness. But unless the font is tiny I do usually cope well still with play scripts. The harder challenge is trying to imagine the full picture. Sometimes there are staging clues. But yes, that's a format I can still usually still read. Thankfully.

A marvellously daft but fun end to the afternoon, sitting in the car in the rain by the seaside in Broughty Ferry, sharing a jumbo sausage and chips. I've wanted to get down to the seaside for weeks, but with repeated rounds of Covid in January and February here we've kept missing the chance. Plus I am generally too ill with my neurological illness. But this afternoon when I woke late we bundled me into the car, still in pyjamas and dressing gown, and off we went. Had some top quality guilt tripping from a seagull standing on the sea wall beside us. I also enjoyed watching Eduardo Alesssandro's art gallery staff rearranging their window display of paintings while Martin fetched the chips. Good stuff. Soon back to bed, but really enjoyed that.

Oh and yes, if there was ever a more appropriate time to use the Dundee icon from purplecat I'm not sure what it would be.

Compared to last year's 60 books finished reading this year has not got off to a good start. We're approaching the end of January, and I've just finished my second book of the year. However I anticipated problems, as my reading slumped dramatically in late 2023 after Covid vaccine number 8 and yet another long neurological illness flare. Plus there is ongoing disease progression. So I set my 2024 Goodreads reading goal as just 25 books. I wonder if I will make it!

So far I've finished illustrated poem Wenceslas by Carol Ann Duffy, which was nice, especially the illustrations, but unbalanced in retelling the traditional Christmas carol story. And today I finished The Children of Hurin by JRR Tolkien, collecting the various strands of their story in a single version. That was um something. I don't think I will reread it, but glad that I did read it if just once. Even if I skipped the Silmarillion-esque intro. Rating 3/5. Ditto for the poem.

Started number crunching for my annual blog post of books read for fun this year. Quick initial stats: 60 books finished in 2023, almost 20,000 pages read, average 375 pages a week. Despite being heavily sedated from progressive neuro disease, needing a Kindle with utterly gigantic font to keep reading. So grateful I still can! More details to follow soon.

I’ve two fiction books well on the go that I’m hugely enjoying - The House in the Cerulean Sea and the first Redwall book - but I’ve been unable to read them for a couple of weeks now. Just totally exhausted at bed time. And during the day I’m generally asleep too. And a 3 month long neurological illness flare likely starting in a week. So I’m not sure if I’ll finish any more books by the end of this calendar year. Fortunately I reached my 50 books reading challenge goal a month ago (and haven’t finished a book since). It’s amazing I can still read at all for fun, given how much I struggle with print now, and how much I sleep. Thank goodness for eBooks with gargantuan font options! But even that’s not helping enough right now.

This is rough, but on day 9 of Covid I am overjoyed to have managed to get the box out today. This is my wee French chromatic button accordion (the one in this post's icon picture), with a warm swing sound. Also very relieved yet again that I didn't get the extreme musette tuning I initially fancied 😉 I am only practicing intermittently but amazed how quickly I am getting on with this totally different system I've been learning since June (no piano keyboard, unlike the type of accordion I have played since the mid 1970s). This tune was played reading from sheet music. I wanted to play the wee box earlier in the week but was way too achy and then temperature still bonkers for days. But managed a half hour or so's play tonight. So chuffed. A quick recording of me playing Sunrise Sunset is on my website. Full of fluffs, but honestly I'm just delighted. Also staggered how I'm retaining the new skills I'm learning given how spread out my practices are. This is the new accordion that seems to be helping me recover lost neurological right hand control. Win win.

(As in a room to go and rest in, British meaning, not the US meaning of a toilet)

Was reminded by a post today on Facebook from a uni friend about the “rest room” in Dundee University’s main Tower building basement, that was an enormous help to me during my postgraduate studies and during the year I was working as a research assistant as well part-time. I was battling my progressive and worsening neurological disease, and it was an enormous help to be able to go into this dedicated room with reclining chairs where I could have a lie down for an hour or so. It’s a little known facility but is especially useful for disabled or long term ill students who don’t otherwise have somewhere quiet to go. I used to always ask at the Tower front desk (usually Muriel!) for the key. But later I got my own key to keep and use. Long since returned.

Got a nice reply from one of the Maugein staff who I'd emailed (carefully written in French!) to say just how much the chromatic button accordion seems to be helping me recover some better neurological control of my right hand. Which has been poorer since I had effectively a stroke in 2004 when my cerebral vasculitis relapsed suddenly and dramatically, and I was a lot weaker for a very very long time down my right side. She says they have other clients who have had strokes, and whose doctors have insisted that they must keep practicing the chromatic button accordions. Which are a particularly intricate form of accordion to play. But a wonderful exercise for limb and hand control, plus mental gymnastics. Mine seems to be helping my hand control more generally, including helping me play my piano accordion much better and for vastly longer. Quite an incredible result - I only started learning the chromatic button accordion in mid June.